Our Families Journey Caring for a Mom with FTLD-MND

It is important to know as you read this journal that this was Cathy's life post diagnosis...

To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.

Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)

Thursday, August 2, 2007

Leaving Work

How are we going to care for Cathy now that she needs supervision? Now that she is afraid to be alone? Cathy grew up in the country, raised her boys while Gayle was out of town alot, & spent many many nights alone after the boys grew up & Gayle was out of town for work. But now all of the sudden she is afraid to be alone. She has mentioned Bears being outside, she thought she saw a man breaking into her van one night, & she says she doesn't like being alone at night anymore.

After many discussions with family... lots of ideas bounced around... Ryan & Gretchen moving up, Aunt Nina moving in to help, assisted living, nursing homes, etc... Brad & I offered for me to take leave from work to help out. Cathy seems comfortable when she is at our house, she does not get restless here. Probably because she lived next door to us here for a few years & since they moved back to Wisconsin they visit & we have family gatherings here.

So in early August I decided to help as much as I can. I talked with our Nursing Director at work & checked into FMLA. Since Cathy is my Mother-In-Law and not my Mom I do not qualify for FMLA. But I can switch my working status to prn (as needed), I will lose my benefits: retirement, health care, vacation etc.. But I will have a job to come back to someday, hopefully. Cathy is going to move in with us the end of September sometime. We are still working out all the details.

The biggest issue is how do we tell her. I have mentioned it to her over the summer. When it seemed she was having a good day I would ask. "Cathy, if someday you need help & someone to take care of you, where would you want to be?" Her answer was always the same, "#9, I am going to get the shot #9." This is a shot that was discussed earlier that "may" be able to help, but at this point it is not available. So I would say, "Cath, until #9 is available, what would you like to do?" She would say that she would like to visit us so she isn't alone at home or maybe Ryan could move to Wisconsin. Sometimes she would mention having Toby move to Wisconsin when he retires from the Air Force. I left it at that. I don't really feel like it is my place to tell her. I am helping take care of her, but she is still Brad's Mom. I will leave that up to Gayle & the boys.

I really think it is best to not upset her, since she is comfortable "visiting" us I just plan on still calling it that. A long visit. I am afraid that if we tell her she is staying it will upset her. She will miss her home. So for now we will try to make her comfortable in our home, get a room ready for her here, & see how it goes. The kids & I can visit Wisconsin on weekends. (around Chase's school schedule) We also will spend Thanksgiving week up there & maybe Christmas. I know that Gayle has discussed taking her home a few times. We will see how it all plays out. Prayer... lots of Prayer!

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